About this session

Thursday, 11:50 AM - 1:20 PM

Disabled Children are Also Children: Rationale and Strategies for Including Disabled Children in Developmental Science

People with disabilities experience marked health disparities in multiple domains. In fact, disabled people are the largest health disparity population in the US, a group which includes over 4% of American youth (Young, 2021). Disabled people, particularly disabled children, are also systematically under-represented in research, both with respect to inclusion in “representative” research studies and in the amount of federal funding allocated to understand the unique experiences of these individuals through focused, disability-specific research. This state of affairs violates important ethical principles such as respect for autonomy and beneficence, as well as efforts to improve the value and rigor of public health research (Spong & Bianchi, 2018).

Exclusion of disabled youth from scientific research is often couched in terms of threats to scientific validity, even when this has not been empirically demonstrated. For example, the ABCD study excludes legally blind children because of their inability to complete visual components of the neurocognitive battery, even though many other study procedures would be feasible in these youth (Luciana et al., 2018). In fact, ABCD investigators note that low visual acuity “could indicate deviations in neuronal organization that would be important to ascertain,” (Luciana et al., 2018, p. 70), while simultaneously designing the study in such a way that no data can be collected to actually identify or characterize these differences. When disabled children are included in population-based developmental studies (e.g. Ching et al. 2013), the disabled vs. non-disabled dichotomy may be the only way disabled children are characterized, leaving out important findings that could help to improve outcomes for this group. Even in the Add Health study, which included a purposive sample of physically disabled adolescents, almost no data were collected on other types of disabilities; interviewers were asked to code whether the respondent was blind or deaf, without asking questions about hearing or vision to the child or parent.

Researchers often argue that exclusion of disabled children is justified because these children are different from nondisabled children in a way that is meaningful to the research being conducted. Yet, this rationale supports a compelling case for inclusion, insofar as identifying shared and distinct risk and protective factors for poor developmental outcomes is the underlying rationale for research with diverse groups. For instance, ABCD data has been leveraged to identify explanatory mechanisms underlying race-related differences in brain structures, which may be driven by racial disparities in exposure to childhood adversity (Dumornay et al., 2024). This important work would have been impossible if researchers excluded racial or ethnic minority children as “meaningfully different” in the way that disabled children are.

The proposed roundtable is designed for an audience of researchers who primarily work with “typically developing” or non-disabled children. The roundtable will highlight the expertise of child development scholars whose work involves disabled children, including children with different disability types and co-occurring or multiple disabilities. First, each panelist will briefly describe their research interests and prior experiences with disabled children. Dr. Adam Schmidt, Associate Professor of Clinical Psychology at Texas Tech University, will share insights from a career studying early childhood cognitive development in relation to adverse experiences, as well as the goals and study aims of his upcoming NEI-funded research study on the deleterious effects of ableism on blind and visually impaired youth. Dr. Caroline Roberts, Postdoctoral Fellow at the Institute on Community Integration. will share insights from her work integrating literature on self-injurious behaviors in youth with and without intellectual and developmental disabilities . Dr. Ryan McCreery, Vice President of Research at Boys Town National Research Hospital, will describe his longitudinal research on development of deaf/Deaf and hard of hearing youth, as well as his current research including children and adults with Down Syndrome. Dr. Sarah Victor, Associate Professor of Clinical Psychology at Texas Tech University, will moderate the panel, integrating her expertise in self-injury, suicide, and minority stress processes in marginalized groups as it applies to psychiatric and other disabilities.

Panelists (named above) will respond to questions from the moderator and from the audience. Specific questions will include, but are not limited to, those outlined below.

1) Please share an example of how research focused exclusively on disabled youth is needed to address health inequities in this population.
2) Please share an example of how integrating disabled youth into large-scale child development research is important to the understanding of either disabled youth or all youth (disabled and non-disabled youth).
3) Please share a way that accessible and inclusive research practices can be used to help understand similarities and differences between disabled and non-disabled youth.
4) What are the biggest barriers you have faced at the proposal (funding acquisition) stage to inclusive research with disabled youth? How have you addressed them?
5) What are the biggest barriers you have faced at the institutional stage, such as with IRBs, to conducting inclusive research with disabled youth? How have you addressed them?
6) What are some of the benefits you have experienced from doing this work?
7) How have you included disabled individuals (families, youth, researchers, staff, students) into your work? What strategies can you recommend to others in this domain?
8) What are some examples of ways that the research process may be unintentionally exclusionary towards participants with disabilities?
9) What are some examples of attempts at accessibility that are not appropriate, offensive, or simply not good enough?
10) What systems-level changes do you see as necessary to improve inclusion of disabled youth in research?
11) What do you want researchers who focus on “typical” (non-disabled) youth to know about the disabled children you work with?

Note: The authors use both person-first (“people with disabilities”) and identity-first (“disabled people”) throughout this submission to reflect the varied preferences of members of this community with respect to the language used to describe them.

Over three million children in the United States have disabilities, but their experiences are often overlooked in scientific research. People with disabilities are one of the largest groups facing health disparities in the US, yet even large, robustly designed studies aiming to capture a representative sample of American children often exclude disabled youth or fail to collect data on disability in any meaningful way.

Federal laws and internationally recognized ethical principles emphasize the importance of including disabled people (including children) in educational, social, and occupational settings. Yet, in research contexts, these youth are often excluded out of convenience, unconscious bias, or an unwillingness to address practical access barriers. Although support for research with disabled people has increased in recent years, more work is needed both through disability-specific studies and via inclusion of children with disabilities in developmental research designed to capture population-level data.

In this roundtable, Dr. Sarah Victor (Moderator) will bring together esteemed researchers whose work includes disabled and non-disabled youth. Drs. Adam Schmidt, Caroline Roberts, and Ryan McCreery (Panelists) will describe their research, emphasizing study of childhood deafness, visual impairment, and intellectual and developmental disabilities. Presenters will provide a rationale for inclusion of these youth in “general” developmental research, describe accessible research procedures, and discuss methodological and theoretical benefits to examining drivers of disparities faced by disabled youth. Ample time will be provided for audience questions and discussion, with the goal that attendees leave more prepared to include disabled youth in research across the spectrum of developmental science. Over three million children in the United States have disabilities, but their experiences are often overlooked in scientific research. People with disabilities are one of the largest groups facing health disparities in the US, yet even large, robustly designed studies aiming to capture a representative sample of American children often exclude disabled youth or fail to collect data on disability in any meaningful way.

Federal laws and internationally recognized ethical principles emphasize the importance of including disabled people (including children) in educational, social, and occupational settings. Yet, in research contexts, these youth are often excluded out of convenience, unconscious bias, or an unwillingness to address practical access barriers. Although support for research with disabled people has increased in recent years, more work is needed both through disability-specific studies and via inclusion of children with disabilities in developmental research designed to capture population-level data.

In this roundtable, Dr. Sarah Victor (Moderator) will bring together esteemed researchers whose work includes disabled and non-disabled youth. Drs. Adam Schmidt, Caroline Roberts, and Ryan McCreery (Panelists) will describe their research, emphasizing study of childhood deafness, visual impairment, and intellectual and developmental disabilities. Presenters will provide a rationale for inclusion of these youth in “general” developmental research, describe accessible research procedures, and discuss methodological and theoretical benefits to examining drivers of disparities faced by disabled youth. Ample time will be provided for audience questions and discussion, with the goal that attendees leave more prepared to include disabled youth in research across the spectrum of developmental science.

Session moderator
Dr. Sarah Elizabeth Victor, Texas Tech University, United States

Panelists
Dr. Ryan W. McCreery, Boys Town National Research Hospital , United States
Dr. Caroline Roberts, University of Minnesota , United States
Adam T. Schmidt, Texas Tech University , United States

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